Saturday, October 16, 2010

God and Tomas, part five

The call came from the geneticist on a Thursday afternoon while I was folding socks. She got right to the point and told me the amnio was positive. She asked if I was going to be ok, I told her I would be fine. She agreed with me, we had met before and she knew I meant it. I would be fine.
My husband was a different story. I have debated so much about whether to type this all out, but finally I decided that if I was going to tell the story of my son, than this was part of it.
That afternoon I was a wreck, because I had to tell him, and I knew he would grieve, and I knew it was all because of me wanting a third child. The guilt was incredible, so very, very heavy. I loved the baby and would not turn back the clock for anything, despite what was coming our way. I wanted this baby, not any other one, this little one that needed me more than any previous child. But I also love my husband dearly, and the thought of the pain I was causing him tore my soul in two. You see? I had chosen. My loyalty lay with my son, and I would not betray him, even to commiserate with my husband. I could not feel what he would feel and the thought of us being so very far apart on this devastated me.
I called a friend in tears, because I just dreaded telling him. And God was with me again. She told me the most amazing thing, she told me all the fear and apprehension I was feeling was from the devil, and I was letting him win. She told me God would continue to work wonders on our family and to keep my trust in Him. This was not a friend with whom I ever really discussed religion, not for any particular reason, it just wasn't part of our relationship. For her to snap me back to place like that was nothing short of the Holy Spirit working through her. I hung up, composed and ready to face what was coming.
My husband came home from a business trip that evening, and during our welcome home hug, I whispered "the baby does have DS". His shoulders collapsed in my arms, he stayed there a few seconds longer and then walked away. I went to make dinner, having chosen my path, and only prayed he would soon choose to walk it with me. That night was awful. He raged and he grieved, and I sat there. Completely in love with the little one inside me and therefor unable to share in anything he was going through. I felt our marriage bonds fraying, felt the ties that bind falling away. And I could do nothing to grab them and hold them tight, because I had chosen. I was on the other side, and I could only watch, and wait, and pray.

All about Tomas

When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.

"The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The
real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not. "